Family caregiver emotional distress in advanced cancer: the DME-C scale psychometric properties.

BACKGROUND: Family caregivers of patients with advanced illness at end of life often report high levels of emotional distress. To address this emotional distress is necessary to have adequate and reliable screening tools. AIM: This study analyses the psychometric properties and clinical utility of the Family Caregiver Emotional Detection Scale for caregivers of patients with end-stage cancer (DME-C, Spanish acronym) who are receiving palliative care (PC). DESIGN: Multicentre, cross-sectional study. SETTINGS/PARTICIPANTS: Family caregivers of patients with advanced cancer at end of life receiving palliative treatment were interviewed to explore their emotional distress through the DME-C scale and other instruments measuring anxiety and depression (Hospital Anxiety and Depression Scale (HADS)), distress thermometer (DT) and overload (B), as well as a clinical psychological assessment (CPA). RESULTS: 138 family caregivers, 85 (61.6%) female and 53 (38.4%) male, with an average age of 59.69±13.3 participated in the study. The reliability of the scale, as measured by Cronbach's alpha, was 0.76, and its stability over time was 0.734. Positive, significant correlations were found between the DME-C and the scores for anxiety and depression registered on the HADS scale, as well as with the total result of this latter scale and the results for B, the DT and the CPA. A statistical analysis of the receiver-operating characteristic curves showed that the scale has a sensitivity and specificity of 75%, and that the cut-off point for the detection of emotional distress was a score ≥11. Fifty-four per cent of the caregivers displayed emotional distress according to this scale. CONCLUSIONS: The DME-C displays good psychometric properties. It is simple, short, reliable and easy to administer. We believe that the instrument is useful for the detection of emotional distress in the family caregivers of hospitalised patients suffering from end-stage illnesses and receiving PC.

Desarrollo de la escala DME-C: una escala para la detección del malestar emocional de los cuidadores principales de personas con enfermedad avanzada o al final de la vida / Development of the DME-C: A scale for detecting emotional distress in primary caregivers of patients living with advanced illness or approaching end of their lives

Se presenta el desarrollo de la Escala de Detección de Malestar Emocional de los Cuidadores principales de pacientes con enfermedad avanzada o terminal que reciben cuidados paliativos (DME-C). Se describe el proceso de elaboración de la escala. Para ello, se ha revisado la bibliografía existente sobre el tema, se ha establecido un marco teórico de referencia y los criterios que debía cumplir el instrumento de cribado que se iba a elaborar. La escala DME-C consta de 2 partes: 1) 3 preguntas dirigidas a los cuidadores, y 2) la observación realizada por el personal sanitario de la presencia de signos externos de malestar emocional del cuidador. La escala final fue revisada tanto por expertos como por cuidadores. La escala DME-C es una herramienta apropiada para la identificación del malestar emocional de los cuidadores. Proponemos el uso sistemático de la DME-C para una detección precoz e intervención específica del sufrimiento emocional

This paper presents the development of the Detection of Emotional Distress Scale in primary Caregivers (DED-C) of patients living with advanced disease or terminal illness who are receiving palliative care. The scale development process is described. For this purpose, literature has been reviewed and a theoretica framework of study as well as the characteristics of the screening tool have been established. The DED-C scale consists of 2 parts: 1) 3 questions addressed to primary caregivers, and 2) the health care professional’s appreciation or observation of any external signs of emotional distress on behalf of the caregivers. The final scale was reviewed by experts and caregivers. The DED-C scale will be an appropriate tool for identifying caregivers’ emotional distress. We propose the systematic use of DED-C for early detection of and specific intervention on emotional distress

El cine como instrumento de adquisición de experiencia ante la muerte, las pérdidas y el duelo / The cinema as a tool for acquiring experience of death, losses and pain

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The psychological impact of a false-positive screening mammogram in Barcelona.

The purpose of this study was to ascertain the psychological impact of mammographic screening for women who receive negative results and for those who need additional non-invasive and invasive complementary investigations to exclude breast cancer (false positives). One hundred fifty women who attended a breast cancer screening programme in Barcelona, aged 50-69 years, were included in this study: 50 with negative results and 100 with false positive mammograms (50 underwent non-invasive and 50 underwent invasive complementary investigations). Participants worried little until they underwent mammography, but worries increased when a telephone call notified the women of the need for further testing. A substantial proportion of women requiring further assessment reported that they were at least somewhat worried about having breast cancer throughout the screening process (P < 0.0001). Nevertheless, levels of anxiety and depression, measured by the Hospital Anxiety and Depression Scale, showed no statistically significant differences among the three groups. In conclusion, although the women showed no psychological morbidity, there is a substantial psychological response in those with an abnormal screening mammogram.

Evaluación de las propiedades psicométricas del cuestionario de Detección de Malestar Emocional (DME) en pacientes oncológicos / Assessment of the psychometric properties of the Detection of Emotional Distress Scale in cancer patients

Objetivo Con el fin de valorar y aliviar el malestar emocional al final de la vida, se necesitan instrumentos de cribado sencillos, de fácil uso por los sanitarios y comprensibles por los enfermos. En el presente estudio multicéntrico se analiza la utilidad clínica del cuestionario de Detección del Malestar Emocional (DME) en enfermos hospitalizados con cáncer avanzado. Métodos Para determinar las propiedades psicométricas de la escala se administró, a la vez que otros instrumentos y procedimientos, a 105 pacientes con enfermedad oncológica avanzada ingresados en unidades de cuidados paliativos de cinco hospitales de Cataluña. Resultados Se observó que el 58,3% presentaba malestar emocional moderado o muy intenso, similar al objetivado con otras escalas, como el termómetro emocional. El análisis estadístico de las curvas ROC sugiere que el punto de corte para la detección de malestar emocional que muestra el DME equivale a una puntuación ≥ 9 puntos, con una sensibilidad y una especificidad superiores al 75%.ConclusionesEl DME es útil y de fácil manejo para la identificación del malestar emocional en los enfermos oncológicos avanzados ingresados en unidades de cuidados paliativos. Se sugiere que esta escala también se podría aplicar a otros enfermos y ámbitos de la atención sanitaria, por ejemplo la atención domiciliaria o la atención primaria en enfermos crónicos (AU)

Objective To evaluate and alleviate the emotional distress suffered by advanced cancer patients, simple screening methods that can be easily used by health staff and easily understood by patients are required. The objective of this multicenter study was to analyze the psychometric properties and clinical utility of the Detection of Emotional Distress (DED) scale in advanced cancer patients attending a palliative care unit. Methods The DED scale was administered to 105 advanced cancer patients attended in five palliative care units in Catalonia (Spain).Results A total of 58.3% of the patients had moderate to severe emotional distress, a result similar to those of other scales such as the emotional thermometer. Statistical analysis of ROC curves suggested that the cutoff for the detection of emotional distress by the DED scale was equivalent to a score of ≥ 9 points, with a sensitivity and specificity above 75%.ConclusionsThe DED scale is useful and easy to use in the identification of emotional distress in advanced cancer patients attended in palliative care units. This scale could also be applied in other patients and health care fields, such as patients with chronic diseases, home care, and primary care (AU)

[Assessment of the psychometric properties of the Detection of Emotional Distress Scale in cancer patients]. / Evaluación de las propiedades psicométricas del cuestionario de Detección de Malestar Emocional (DME) en pacientes oncológicos.

OBJECTIVE: To evaluate and alleviate the emotional distress suffered by advanced cancer patients, simple screening methods that can be easily used by health staff and easily understood by patients are required. The objective of this multicenter study was to analyze the psychometric properties and clinical utility of the Detection of Emotional Distress (DED) scale in advanced cancer patients attending a palliative care unit. METHODS: The DED scale was administered to 105 advanced cancer patients attended in five palliative care units in Catalonia (Spain). RESULTS: A total of 58.3% of the patients had moderate to severe emotional distress, a result similar to those of other scales such as the emotional thermometer. Statistical analysis of ROC curves suggested that the cutoff for the detection of emotional distress by the DED scale was equivalent to a score of ≥ 9 points, with a sensitivity and specificity above 75%. CONCLUSIONS: The DED scale is useful and easy to use in the identification of emotional distress in advanced cancer patients attended in palliative care units. This scale could also be applied in other patients and health care fields, such as patients with chronic diseases, home care, and primary care.

Elaboración y propuesta de un instrumento para la detección de malestar emocional en enfermos al final de la vida / Purpouse of an instrument for the detection of emotional distress in patients at the end of life

Objetivo: Establecer la sistemática de trabajo de un grupo multidisciplinar cuyo objetivo es elaborar un instrumento para detectar el malestar emocional en enfermos al final de la vida. Material y métodos: Se describe la formación y composición del equipo investigador así como su dinámica de trabajo a lo largo de 2007 y 2008 en múltiples reuniones presenciales y on-line así como la bibliografía, el modelo y criterios que sirvieron de base para el debate que condujo a la elaboración del instrumento. Resultados: Se presenta el cuestionario DME, que consta de dos partes: 1) cuatro preguntas dirigidas al enfermo, y 2) observación, por parte del sanitario, de signos que muestren la presencia de malestar emocional. Actualmente se encuentra en proceso de validación (AU)

Objective: To establish the methodology of work for a multidisciplinary group whose objective is to generate a tool to detect the emotional distress in patients at the end of their lives. Material and method: It describes the configuration and composition of the researching team as well as its method of work throughout 2007 and 2008. The combination of multiple face to face meetings, online conferences and the review of related bibliography formed the model and the criteria used as the basis for the debate that lead to the elaboration of the instrument. Results: The questionnaire DME is presented, and consists of two parts: 1) four questions addressed to the patient, and 2) observation by the health staff of signs that show the presence of emotional distress. At the moment, the instrument is under validation (AU)

Proper information during the surgical decision-making process lowers the anxiety of patients with high-grade gliomas.

PURPOSE: We aim to analyse the relationship between the quality of information during the decision-making process regarding surgery to treat high-grade gliomas and the level of anxiety of the patients. METHODS: This is a transversal, descriptive and correlational study on 26 patients with a clinical and radiological diagnosis of high-grade glioma. They scored the quality (in terms of comprehension and satisfaction) of information received about the treatment options and prognosis during the surgical decision-making process, and the Hospital Anxiety and Depression Scale questionnaire (HADS) was applied immediately afterward. RESULTS: Lower levels of anxiety were observed in patients who showed a desire to receive information regarding their illness, those with a higher degree of comprehension, and those with a higher level of satisfaction with the information provided. CONCLUSIONS: An improvement in the communication process contributes to a decrease in the levels of anxiety, and consequently to enhancement of the well-being of these patients.

¿Es posible la felicidad en el paciente oncológico al final de la vida? / Is happiness possible in oncological patients at the end of life?

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¿A qué se atribuye que los enfermos oncológicos de una unidad de cuidados paliativos mueran en paz? / What factors contribute to the fact that the patients of a palliative care unit die peacefully?

Introducción: Hoy en día, el avance de la ciencia y las tecnologías facilitan que la esperanza de vida se incremente constantemente, es decir, la población envejece día a día y la muerte se puede retrasar más. Todo ello permite pensar en un incremento de la prevalencia de enfermedades degenerativas, y por tanto de las fuentes potenciales de sufrimiento. Ya en 19976, el Instituto de Medicina de EEUU (IOM) denunció la tolerancia frente a la aplicación inapropiada de tecnología que alargan la vida y la infravaloración de la paliación del sufrimiento. En nuestro país, unas 120.000 personas se encuentran en situación de enfermedad terminal enfrentándose a una muerte inminente. Pocos son los estudios realizados en España en que se explore cómo mueren estos pacientes. Teniendo en cuenta este escenario, se presenta a continuación un estudio en el que se exploran las atribuciones de una muerte en paz de pacientes oncológicos en situación avanzada-terminal. Objetivo: El propósito del presente estudio exploratorio es responder a la pregunta ¿A qué se atribuye que los enfermos de una Unidad de Cuidados Paliativos mueran en paz? Se pretende identificar y describir que factores se asocian a la percepción que tiene el equipo de enfermería que lo ha atendido como la de sus cuidadores principales. Método: Se ha evaluado mediante 25 cuestionarios autoadministrados tanto a los cuidadores principales como al equipo de enfermería que atendieron a 25 pacientes con enfermedad oncológica en situación avanzada-terminal fallecidos en la Unidad de Cuidados Paliativos del Servicio de Cuidados Paliativos del Hospital Duran y Reynals de L´Hospitalet de Llobregat (Barcelona). Resultados: El 72% del equipo de enfermería y el 64% de los cuidadores principales familiares estaban completamente o bastante de acuerdo con que el paciente murió en paz. Mientras los sanitarios consideraron que el paciente murió en paz gracias a aspectos somáticos como el buen control de síntomas (69,5%), los cuidadores principales atribuyeron la muerte en paz a aspectos psicosociales (81,8%) (AU)

Introduction: Nowadays, the advance of science and technology are facilitating that life expectancy keeps increasing continuosly. This means that population ages on a daily basis and death can be delayed even more. All these facts contribute significantly to the increase and prevalence of degenerative diseases, and therefore, the growth of potential new sources for suffering. Already in 1997 The USA Institute of Medicine (IOM) denounced the risk to the unsuitable application of technologies that increase life expectancy and the under-valuation of the alleviation of the suffering. In our country, 120.000 people suffer terminal diseases and are facing an imminent death. Few studies in Spain have explored how these patients die. Within this context, this study examines the qualities of a peaceful death in patients who have suffered form a cancer and are in an outpost-terminal situation. Objective: The aim of the present exploratory study is to answer to the question: What factors contribute to the fact that the patients of a palliative care unit die peacefully? The research tries to identify and to describe the factors that contribute to a peaceful death not only from the perception of the nursing team involved in the patient´s care but also from their main caregiver’s ´point of view. Method: 25 self-answered questionnaires distributed among the main caregivers and 25 questionnaires distributed among the nursing team who cared for those 25 patients with far-advanced cancer disease that died in the Palliative Care Unit at the Hospital Duran y Reynals de L´Hospitalet de LLobregat (Barcelona) have been analyzed and used as research evidence. Results: 72% of the nursing team and 64% of the main caregivers were completely or close to total agreement that patients had died peacefully. However, while the nursing team good control of symptoms (69.5%) to conclude that patients had died peacefully , main caregivers attributed the peaceful death to psycho-social factors (81,8%) (AU)

Assessing self-reported adherence to HIV therapy by questionnaire: the SERAD (Self-Reported Adherence) Study.

The relationship between adherence to highly active antiretroviral therapy (HAART) and RNA-HIV viral load outcomes has been extensively shown. Although there are different procedures for assessing treatment adherence, there is no ideal method. We present the SERAD (Self-Reported Adherence) questionnaire, a qualitative and quantitative self-reported instrument designed to provide an easier adherence measurement. We also compared the questionnaire to three other methods to evaluate adherence to HAART regimens in HIV-infected patients. Two prospective, observational, longitudinal studies were developed: a single-center pilot study followed by a multicenter study. A total of 530 HIV-infected outpatients was prospectively included, 66 in the pilot study and 464 in the multicenter study. Four methods were used to study adherence to HAART regimens: the SERAD questionnaire, pill count, electronic monitoring, and plasma drug monitoring. Pearson's correlations and Bland and Altman's method were developed. The SERAD questionnaire showed good feasibility and significant validity. Adequate levels of agreement between methods were observed, particularly when adherence was high. Differences increased as adherence fell. Moreover, the questionnaire was completed correctly, the interviewers did not report uncovered aspects, and the information was collected easily. Our results suggest that the SERAD questionnaire is a feasible and useful instrument for assessing adherence to HAART regimens in HIV-infected patients, and makes it possible to obtain reliable qualitative and quantitative information related to treatment adherence.

Toma de decisiones en el paciente diagnosticado de tumor cerebral. A propósito de un caso clínico / Decision making process in patients with brain tumor. Concerning a case report

Justificación: La decisión sobre la alternativa terapéutica más conveniente, que corresponde al paciente asesorado por el equipo sanitario, se hace especialmente difícil en casos de mal pronóstico. Pacientes: Paciente joven con tumor cerebral, reintervenido en diversas ocasiones, al que se detecta una recidiva. Resultados: En contra de la opinión del equipo multidisciplinar, el paciente decide someterse a una reintervención, falleciendo a los cuatro meses presentado una calidad de vida aceptable. Conclusiones: Se plantea la necesidad, a través de un counselling adecuado, de permitir que el paciente escoja el resultado clínico preferido tras la transmisión clara de las distintas consecuencias de cada decisión y de la probabilidad de que cada una de ellas ocurra, evitando el uso de términos confusos, como la descripción técnica de procedimientos y las sugerencias globales sobre las decisiones. Se enfatiza el respeto a la autonomía del paciente, bajo condiciones de no maleficencia (AU)

The patient´s decisión regarding the most advisable therapeutic alterantive is difficult, speccially in patients with por prognosis. Patients: Young patient who was operated on several times by brain tumour and he was admitted again by tumour recurrence. Results: The patient preferred to be reoperated against the multidisciplinary team decision. His quality of life was acceptable gut the patient died four months later. Conclusion: We think that the patient could be able to choose the preferred therapeutic option after adequate counseling. Confusing term such as technical description should be avoided. We emphasize the respect to the patient´s autonomy under non-maleficent conditions (AU)

Cuidados críticos y sufrimiento / Critical care and suffering

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Influencia de la proximidad de la muerte en los factores que pueden ayudar a morir en paz / Influence of the proximity of death on the priority of the factors that can help people to have a good death

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Morir en paz: evaluación de los factores implicados / Dying peacefully: evaluation of its influencing factors

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¿Qué puede ayudarnos a morir en paz? / What can help us to face death peacefully?

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